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Metastatic Papillary Synthroid (levothyroxine) Thyroid Cancer

Thyroid Cancer Stories: Papillary, Stage 2 | Nancy’s Story

Nancy, Metastatic Papillary Thyroid Cancer, Stage 2

Cancer details: Spread to lymph nodes
1st Symptoms: Lump in neck
Treatment: Thyroidectomy (entire removal of thyroid), radioactive iodine treatment 

Nancy’s Thyroid Cancer Story: Papillary, Stage 2, Metastatic

Nancy saw a lump on her neck, but with a history of cysts, didn’t think much of it. After undergoing an ultrasound, a couple CT scans, and biopsies, she learned she had metastatic papillary thyroid cancer.

She underwent surgery (thyroidectomy) and radioactive iodine (RAI) treatment. Now on indefinite ongoing hormone therapy, taking Synthroid everyday, Nancy shares her entire journey with a message of encouragement to others facing down the same diagnosis.

Stay positive.

When I feel any little pain in my body, my mind goes to cancer. When I have pain in the back of my throat every now and then, my mind goes to cancer. It is easier said than done, and it is something that I am still working on.

I have always been the type to take it one day at a time. I still live that way. Every morning I wake up grateful and thankful, that I get to live another day. 

Nancy


Getting Diagnosed

What were the first symptoms

Sometime in April 2018, I noticed a lump on my neck. It was over the right side of my clavicle. I really didn’t think too much about it. I have a history of cysts.

One day, while I was at my acupuncture appointment, I told my acupuncture doctor about it. I remember him saying not to worry too much, because it was probably just a cyst. It was not painful, and it was moving easily.

However, he did say that if it doesn’t go away to get it checked. Well, a few months went by and I went to see him again. The lump was still there. He agreed that it would be best to get it checked out by my PCP. 

What do you remember of the first visit to the doctor?

I had Kaiser at the time. I don’t remember the details of that visit or the conversation that I had with my primary care doctor.

However, going back to my records, I saw that she sent me to get a CT scan. Once the results came in, she sent me to go get an ultrasound. 

Describe the ultrasound

When the technician started the ultrasound, he said that most people have nodules on their thyroid, and it ends up being nothing. I thought, phew! I have nothing to worry about!

Well, not quite. Apparently, the ultrasound showed a solid nodule mid portion of the right lobe (high risk lesion) and a simple cyst in the right thyroid and right clavicle region. My doctor wanted me to get a biopsy.

I was at work when she called. She said to go schedule the biopsy right away. I felt a sense of panic.

When I called to make my biopsy appointment, they were able to get me in the same day. I was two weeks into a new job, but my boss was supportive. 

Describe the biopsy

The radiologist explained every step of the process in detail. I remember hearing something about cancer, but I didn’t pay too much attention to it.

The biopsy was very uncomfortable. She took six different aspirations to make sure to get everything. I left a few days later to visit my sister in Nashville. I had already planned the trip before the new job and the biopsy. I was trying to have fun and not think about my biopsy results.

We went to church to pray that Sunday. A few days went by, and I received an email from the radiologist saying that the results were benign. I was so relieved! She said that I needed to do a follow up ultrasound in a year. 

When did you get the follow up ultrasound

A little over a year went by, around 15 months. We had just gotten the news that my younger cousin was diagnosed with lymphoma. We were shocked and saddened by the news. We were still pained by the passing of my uncle, who passed away from lung cancer.

One day my mom looked at me and asked if I had gotten the ultrasound done because it’d been over a year. I realized that I had not. I was upset with myself that I didn’t schedule my follow up as asked.

It was September 2019, and I had just started another job. My insurance was not going to kick in for a few months, so I decided to sign up for Cobra. I made an appointment with a Hoag (Health Network) endocrinologist. She sent me to get an ultrasound.

What were the ultrasound results

When the results came back, she called and sounded concerned. She said that the ultrasound showed some irregularities and findings are worrisome for something called papillary thyroid carcinoma. She wanted me to go get a biopsy.

Here I was a few weeks into another new job. It felt like deja vu! I told my new boss everything. She totally understood and was very supportive.

I made my biopsy appointment. This time, it was a few days out. I was in no hurry to get it done. The pain after a biopsy can last up to a week, and it is very painful. I was not looking forward to doing it again.

Describe the second biopsy

I went to see a Hoag radiologist this time. I was told Dr. Chang was one of the best. The day of my appointment I felt calm and kept reminding myself that I had this same exact scare last year and it was nothing.

I saw a technician first who did the ultrasound. He told me he removed the right side of his thyroid. His biopsy results stated a differential diagnosis, which could be cancer or no cancer.

He said he went to an amazing surgeon, Dr. Coleman, and that I should go to her if I needed surgery. I remembered that name since I used to work with Hoag physicians in one of my previous jobs.

After surgery however, he found out he did not have cancer. I thought oh no. This could be me. Please no. I needed answers now! Then the radiologist, Dr. Chang, came in.

Even though the area was numb, I remember feeling the needle all the way in the back of the throat. It was such a weird and uncomfortable feeling. He also biopsied the lump on my neck.

Dr. Chang knew that I needed answers. He asked if I wanted to wait 15 minutes and he would come back with the pathology results.

»MORE: Dealing with scanxiety and waiting for results

Describe the moment you first heard “cancer”

Hoag has an in-house pathology department. I said okay. He came back and sat down next to me. He said that I would be getting a formal pathology report but from what he saw, and with confirmation from the pathologist, it looked like thyroid cancer.

I immediately asked him to say it again, and he repeated those same exact words. I put my hands over my face and started crying. I told him that I was shocked, and that I was not expecting him to say that.

He repeatedly said that I would be okay, but I needed to remove my thyroid. He said that this type of cancer was easily treatable and that it was the good cancer.

His exact words were, “You are not going to die from thyroid cancer.”

I stayed in the room for a few more minutes, got myself together, and left for work.

How long did it take to get the pathology report

A few days later, I received the pathology report. The pathology came back “suspicious for papillary thyroid carcinoma.” Suspicious? So, did I have cancer or not?

Dr. Chang said I did, but I was not convinced. I went back to see the endocrinologist. She said that the radiologist and pathologist called it. Even though the report said “suspicious,” it was thyroid cancer.

She recommended that I get an MRI prior to surgery and suggested that I schedule surgery with Dr. Coleman. That’s the same surgeon the technician mentioned. I felt so uneasy. I left crying, I was so confused and anxious about the whole thing. 

Describe the MRI

I was so nervous to get the MRI, but I was also hopeful that it would give me more answers. MRI results showed a solid one centimeter nodule in the mid-thyroid.

The exact measurements were 1.2 x 0.9 x 0.7 centimeter nodule in posterior margin of the right thyroid, 2.4 x 1.9 x 2.5 centimeter mass in the right clavicle, and a new finding of right jugulodigastric lymph node measuring 0.8 centimeters.

The report stated that the constellation of MRI and ultrasound findings were worrisome for metastatic papillary thyroid carcinoma. I went back to see the endocrinologist.

She went over the results with me. She stressed that I needed to schedule surgery. I was so scared and nervous for surgery. The words ‘suspicious’ and ‘worrisome,’ in my mind, did not mean cancer.

Did you get a second opinion

I did not get a second opinion. Even though I was confused with the findings, I trusted my medical team. I decided to move forward and consult with Dr. Coleman, the surgeon a few people had recommended.

When did you realize it was likely cancer

I met with Dr. Coleman beginning of November 2019. I showed her the new lump on my neck by my upper right ear, the right jugulodigastric lymph node that the MRI called out.

She was patient, caring, knowledgeable and she explained everything in detail. She had a pen and paper and drew an illustration of my thyroid and where all the nodules and cysts were located, and what she was going to do in surgery.

She did, however, want me to get the newest finding biopsied before surgery. I couldn’t believe what I was hearing. Another biopsy! She stressed that it was important that she knew how far to go with the incision and what areas of the neck she needed to dissect. 

I felt like I was just going through the motions of getting tests done, getting poked and prodded, visiting doctors, and now scheduling surgery. I guess it slowly started to feel like the right thing to do.

I had a good visit with Dr. Coleman, and more and more it was hitting me that this was a very serious situation, and I had to accept it.

When did you officially get diagnosed

I had my second biopsy at Hoag on November 6. A few days later, Dr. Coleman called me. She started by letting me know that she was not happy it was cancer, but she was glad that we finally had 100-percent confirmation that it was.

I had metastatic papillary thyroid carcinoma because it was in fact spreading to the lymph nodes in my neck. As sad as the news was, I finally felt a sense of relief. I had answers!

However, my journey was not over. In fact, the hardest part was yet to come.  

»MORE: Read different experiences of a cancer diagnosis and treatment

Thyroid Surgery and Recovery

Describe the overall surgery (thyroidectomy) plan

We scheduled surgery for December 11, 2019. The plan was for me to stay one night in the hospital. I felt confident going into surgery knowing that I had one of the top surgeons performing my total thyroidectomy with central and right neck dissection.

Dr. Demeure, an endocrine surgeon and expert in cancer surgery, was going to assist her. The surgery was going to be approximately four hours and extensive due to the cancer spreading to my lymph nodes. 

What do you remember from waking up

Let’s talk about the pain that I felt afterwards, it was brutal. Dr. Coleman took out my thyroid and 49 lymph nodes in my neck. Nine of the lymph nodes had cancer. The largest metastatic deposit was 4.0 centimeters.

My mom stayed in the room with me. I was in the worst pain I had ever felt. I could not swallow the little saliva that was trying to go down my throat. Pain medications were not working.

I could not move my head or my neck. I threw up from the anesthesia. I could barely talk. I had a drain tube coming out of my neck, that was filling up with fluid. It was the worst night of my life. 

I would suggest having a family member stay with you if possible. Honestly, I don’t know what I would have done if my mom was not with me that night. 

Describe the full recovery from the surgery

I thought I was going home to recover, but I was wrong. I went home the next day, only to be readmitted to the hospital a few days later.

I woke up on Day 3 and took all my medications as directed. My family was taking care of me, so my sister made scrambled eggs since it was soft, and I could eat it. I started to take a few bites.

Everything seemed to happen at the same time. First, I felt the tingling in my legs. I had felt it for a while that morning, but it felt more prominent. Then as I tried to take a bite of my eggs, I couldn’t really swallow.

Now I was in full panic mode. I spit the eggs out and told my family to take me to the emergency room. My sister, mom, and I ran to the car.

As we started driving, I felt the tingling all over, especially in my stomach. It also felt tight. My hands and lips started to slightly curl. My whole body was shaking.

As panic continued to take over, I asked how much longer the drive was. My sister was so calm, even though later she admitted she was scared. It felt like it was getting worse, so I told them to call 911. I thought I was dying.

My sister called and told them where we were pulling over. The paramedics came and checked me out. At that point I was calm and not shaking as much. They checked my vitals. They were fine. They told me that that it was okay for my sister to continue driving me. 

What was causing this reaction

I later found out I was experiencing hypoparathyroidism. This is a condition in which the body doesn’t create enough parathyroid hormone and can lead to dramatically lowered calcium levels, which can trigger tetany.

This is apparently common after a total thyroidectomy. I was experiencing overly-stimulated nerves that caused muscle cramping. It seems I was having little convulsions all over my body.

How was the recovery in the hospital

I stayed in the hospital for two nights in order to get my calcium levels regulated. Dr. Coleman came to visit me. She explained everything that was happening and checked on me the three days I was in the hospital. Let’s just say there were a lot of blood draws, pills, and little sleep.

The rest of my recovery was painful but bearable.

I had to take very high levels of calcium for a few months until my calcium levels were back to normal. I started to prepare for my radioactive iodine treatment

Did you take time off work after surgery

I really couldn’t take that much time off after surgery. I had just started my job, and I didn’t have any paid time off yet. My surgery was on December 11, 2019.

I ended up taking one week unpaid and then worked from home until after the new year. Because I was readmitted to the hospital a few days after surgery, it really didn’t feel like I had any time off.

My boss was so understanding and reminded me not to overwork myself the second week when I officially was back at work. 

Hormone Therapy (Synthroid)

Describe the hormone therapy you must undergo indefinitely

Since my thyroid is out, I have to take a synthetic thyroid hormone for the rest of my life. I have to take one pill a day to regulate everything. There is a generic version called Levothyroxine, but I decided to take the brand name Synthroid.

My new normal is that I must rely on this small pill to function as my thyroid for the rest of my life. 

What are the Synthroid side effects

I have always been that person who prayed that I didn’t have to rely on medication for survival, especially one that you have to take for the rest of your life.

Now I am that person. I am sensitive to medication, so I was so nervous about starting Synthroid. Thankfully, I do not have any side effects. 

»MORE: Cancer patients share their treatment side effects

Radioactive Iodine (RAI)

Describe the radioactive iodine (RAI) procedure

On January 25 and 27,  I did two Thyrogen injections at the Hoag Cancer Infusion Center to prepare for my radioactive iodine (RAI) treatment, scheduled for January 29.

When I went back to the medical center to take the RAI pill, I had to take a higher dose since my cancer had spread to my lymph nodes. RAI is considered a nuclear medicine treatment and because it gives off radiation, once you take the pill, you have to isolate yourself from other people for at least six days.

Some of the radioactive iodine will be taken up by any remaining thyroid cells, but there will be some left over. The remaining radioactive iodine will leave your body, which is why is you need to be isolated during treatment.

Were there side effects from radioactive iodine (RAI)

I did not feel any side effects from the RAI. Isolating myself for six days after starting treatment was probably the worst part.

Actually, the worst part was the low iodine diet you had to be on for two weeks prior to treatment. If you love food like me, then you need to do your research and find low iodine foods that you can eat.

On my second week, I fell upon an amazing site, LID Life Community, that basically outlined all the low iodine food that you can eat. It was great. I didn’t feel deprived or hungry anymore. 

What was the follow up

One week post-RAI, you get a full body scan. Six months post-surgery, you do a blood test and ultrasound. All my tests have been good up to date.

I had one little scare that almost required another biopsy, but the radiologist was confident that I did not need it. I will continue to get blood work and ultrasounds on a six-month basis. 

Reflections

Describe the support that you received

I could not have done any of this without the support of my parents and siblings. They were involved beginning to end. They were my rocks that kept me safe, positive, and took care of me when I couldn’t take care of myself.

Their prayers, love and support were the main reasons that I got through any of this. When I cried from confusion, fear, and pain they were there. When I had doubts about anything related to thyroid cancer, or my surgery, they were there.

Once the pandemic hit, they did all my grocery shopping, and made sure that I had everything and anything that I needed. I never felt that I was a burden.

I would not have expected anything less than all the amazing things they did for me. There was so much prayer and love, that it really carried me through this experience in such an incredible way. 

Nancy with her mom

My extended family was amazing, as well. The texts, calls, visits and love I received daily from my cousins, aunts, and uncles made the biggest difference in the world. 

My boss was another one of the most supportive people throughout my cancer journey. I had just started my job, but she made sure that I took all the time that I needed.

She was very empathetic, and a great listener. We had many heartfelt conversations. My co-workers also checked on me and showed that they really cared.

Being a self-advocate as a patient

I was not my biggest advocate in my cancer journey. My mom reminded me to follow up and my doctors ordered all the appropriate tests and told me that I needed to have surgery.

Now that I have experienced this, I want to bring awareness about thyroid cancer. If you notice any unusual lumps on your neck, you need to take it seriously. I played it off as a cyst for a few months.

Other symptoms might include swelling in the neck, difficulty swallowing, hoarseness, persistent coughing. Unlike me, if your doctor doesn’t advocate for your health, ask for the tests. 

»MORE: How to be a self-advocate as a patient

Thyroid Cancer Awareness

I want people to read my story so they can see how things transpired for me and relate it back to their own story.

It started with the lump on my neck that was initially benign, the follow up tests a year later that came back as worrisome and suspicious, the second lump on my neck, and then the final biopsy with confirmation.

What shocked me the most was that nine lymph nodes in my neck had cancer. To think that I didn’t want to believe my doctors, do more tests, or schedule surgery, is kind of upsetting now. 

Some people go off “suspicious” or a “differential diagnosis,” and it ends up being cancer or it doesn’t, but they don’t want to risk it. I still needed confirmation and I am glad I got it.

At a time when my family and I were confused, worried, and scared, my doctors were caring, empathetic and confident. Again, I am lucky for the amazing medical team that I have.

Thyroid cancer is known as the good cancer, but no cancer is good. Thyroid cancer is still life altering.

I had an important gland removed from my body. People do not realize, as I initially didn’t, what an important function your thyroid plays.

The hormones produced by the thyroid control your metabolism and how the body uses energy. These hormones influence your heart rate, body temperature, energy levels, mood, women’s menstrual cycles, among other things.

I have to take a synthetic hormone pill every day for the rest of my life. I am so grateful this cancer is treatable, but I am still adjusting to a new normal. My energy level is different and some days it is hard to focus. I overheat easily. Every scan or test gives me scanxiety. Every pain I feel in my body makes me go to the worst-case scenario.

»MORE: Dealing with scanxiety and waiting for results

Almost a year out, and the right side of my neck, by my ear, down to my right clavicle is still a little numb. I go back to the words the radiologist said that one day, “You will not die from thyroid cancer,” and I am grateful and thankful for that every day.

However, not having your thyroid can be hard and this cancer journey is still a scary one. 

Last message to patients

Lean on your family and friends.

The positive love and support keep you going. It made me feel safe, at ease and confident that everything was going to be ok.

Read and do your own research. I read article after article on thyroid cancer, what the surgery entailed, I even watched a video, the hormone pills you must take, etc. I read about other people’s experiences, both positive and negative. 

Find a doctor who cares and listens.

I ended up switching my endocrinologist after my RAI treatment because she wasn’t happy with all my questions and did not spend enough time with me in our visits. I love my new doctor! 

Don’t be afraid to ask questions.

Even questions that you might not want to know the answers. I wanted to know the good, the bad, the ugly, everything. 

Stay positive.

When I feel any little pain in my body, my mind goes to cancer. When I have pain in the back of my throat every now and then, my mind goes to cancer. It is easier said than done, and it is something that I am still working on.

I have always been the type to take it one day at a time. I still live that way. Every morning I wake up grateful and thankful, that I get to live another day. 


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